Hemophilia Daily

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Monday, July 12 (PDF)

Excerpt:

Acceptance, education, and outreach key in supporting women with BDs

Despite significant differences in access to care and cultural environments, the keys to providing psychosocial and therapeutic support for women with bleeding disorders are the same: education and outreach. Patients need help to integrate their bleeding disorder diagnoses into their identities, and in helping their families, medical practitioners, and communities understand their conditions.

“Our aim is always to facilitate our patients’ psychological well-being so that, as they and their families go through life with a bleeding disorder, they are able to cope with what is difficult and enjoy what is good,” said family therapist Nicola Dunn of the U.K.

However, promoting acceptance, support, and understanding does pose additional challenges in some parts of the world, particularly in conservative cultures. Shirin Ravanbod of Iran said the most significant challenges stem from prevailing moral, religious, and cultural values that prevent women from talking about their bleeding, particularly menstruation. These cultural factors are compounded by lack of diagnostic facilities and limited knowledge of women’s bleeding disorders by medical personnel, along with relatively high numbers of women with bleeding disorders, largely due to high rates of consanguineous marriage.

Ravanbod described some of the strategies used to promote improved medical and psychosocial care for women with bleeding disorders. These include better classification and accurate diagnosis of VWD; educational seminars for gynecologists, hematologists, and nurses; outreach targeting teenage girls at school and the broader population; and creation of a fund to help pay for hospitalization and treatment of women with bleeding disorders.

A participant from Pakistan underscored the need to be sensitive and creative in helping women with bleeding disorders in conservative societies. She described programs in Islamabad that train young girls with VWD to become peer counsellors. This not only increases awareness of the bleeding disorders facing women, it also empowers the counsellors and gives them a greater sense of control.

Dr. Susan Halemi of Germany knows firsthand about the bleeding disorders she treats. Diagnosed with severe VWD at two years of age, she is acutely aware of the psychological distress the disorders cause and the importance of taking practical steps to lessen their impact on patients’ personal lives. For example, understanding that gum bleeding can cause severe bad breath that can lead to social stigma and alienation, Dr. Halemi encourages the women she treats to have regular professional dental care. She also stresses the importance of encouraging women with bleeding disorders to find a sport in which they can safely participate, to bolster their sense of belonging and community.

Last Updated July 2010